I did not know I had HIV until I was 14

By Vision Reporter

Added 26th September 2012 02:40 PM

The hard slap across her face got her ears ringing. She did not hear all the insults her tormentor threw at her, in full view and in the hearing of her classmates. On returning to school five weeks later, to write her exams, 18-year-old Angella Sengendo noticed something odd: Everyone seemed to tip

The hard slap across her face got her ears ringing. She did not hear all the insults her tormentor threw at her, in full view and in the hearing of her classmates. On returning to school five weeks later, to write her exams, 18-year-old Angella Sengendo noticed something odd: Everyone seemed to tip

By Vicky Wandawa

Nintey percent of young people today living with HIV got it through mother-to-child transmission. For fear of stigma many keep their status a secret

The hard slap across her face got her ears ringing. She did not hear all the insults her tormentor threw at her, in full view and in the hearing of her classmates. On returning to school five weeks later, to write her exams, 18-year-old Angella Sengendo noticed something odd: Everyone seemed to tip toe around her, their faces a mixture of fear, pity and disgust, save for her three close friends, who were privy to her condition.

One of these friends explained to her why. “On that day the teacher slapped you; she shouted that she pitied your father because you are a burden, being HIV-positive and that you should consider yourself lucky to be in school!”

Sengendo, now 20 years old, still reels in anger as to why a teacher she and her father had trusted to keep silent about her status, had betrayed her.

At the age of six, her parent’s fuss over her made her realise she was different. “I was not like my sister and cousins. At family gatherings, I was the only one wrapped in ill-fitting thick sweaters and scarves when it got cold,” she quietly says, with a faraway look in her eyes. If she so much as coughed slightly, that was the end of the party for her.
She would be rushed to the clinic as her agemates stayed behind to play.

“I started to hate the word hospital, because it meant returning home with lots of tablets and syrups. A week never went by without a visit to my uncle’s hospital,” she says.

Sengendo was not the curious type, so she never asked her parents about it.

At Kampala Junior Academy, despite the tons of medicines she had to take at home, school was fun. “The teachers were friendly and I made friends whose company I immensely enjoyed. I even took up swimming and I was a star.

One cold morning, during a lesson, in P7, she suddenly felt ill. “I could not continue writing. I must have looked really sick because the teacher walked up to my desk and in a whisper asked whether I was fine.”

Before long, her father was driving her to hospital. She had developed asthma. It meant more drugs, but something else took her smile away.
“I was advised to stop swimming, yet I loved it.”

At secondary school, life began to throw lemons at her. “First were the questions I never had answers to: How come your cough never goes away? Why do you often go home?’” she narrates.

The school was located in a swampy area, so the damp conditions aggrevated her condition. Almost every three weeks, she was taken home ill.

In S2, students started talking. She would see them in small groups, perhaps trying to get answers to the questions she never responded to.

Sengendo became reserved. The school matron was the icing on the already bitter cake.

“She was really mean to me, especially when I returned from home. ‘What sort of disease are you suffering from?’ she would shout, embarrassing me,” Sengendo narrates. Even when the questions grew louder, Sengendo never put her parents to task for answers.

“One day, my mother picked me from school. This time however, we headed to an unfamiliar hospital. She explained to me that previously, I was attending a children’s hospital but because I was now grown, I had to attend one for adults. I later learnt it was the Joint Clinical Research Center (JCRC). I remember walking in with my mother and seeing a crowded place with sick looking people, some in wheel chairs.”

Sengendo narrates that whenever she and her mother visited JCRC, some tests were run on her, then her mother would enter a room and leave her waiting outside.

“When she came out, we would hurriedly walk to my father’s car. It’s like they never wanted anyone to know we were there.”
On one of those trips, Sengendo got into the car and sat, while her parents discussed something in hushed tones. “I saw papers on the front car seat. One of them read HIV-positive. Then, I was 14. I knew what HIV was, so I wondered whether it was me or my mother who had it.”

Sengendo still could not find it in her to ask her parents who was HIV-positive.

In the third term holidays, seated between her parents on the verandah at home one evening, they broke the news to her.
“They said my immunity was low and not like other children’s, and that I needed to take vitamins. It was a blow, what I had been suspecting for a while was true. They said I had got it at birth. My mother had been involved in an accident and had had a blood transfusion.

Sengendo asked about her younger sister. She was told that because by the time her mother was pregnant, she was already aware of her HIV-positive status, necessary precautions were taken and so she was negative.
“Even with the bad news, a part of me was glad, that at least, my younger sister would not have to face the trials I was facing,” she says.

The following year, she enrolled in another school for S3, but the relief was short-lived.

“A few weeks in the school and I was baptised ‘the sickly one’. The one-and-a-half years I spent there was hell. My grades fell and even when I copied the notes of the lessons I had missed, it was not enough for me to catch up,” she says.

As if that was not enough, she developed migraines, which the doctor said were a result of a swollen sinus. Though she responded well to the medication, she had fallen too far behind in her classwork and had to repeat the class in another school. Sengendo was depressed. “I kept asking myself, why me? Why wasn’t I like any other teenager? Why was I asked to repeat a class yet it was because of a condition I was born with?” she says.

In the new school, she confided in two of her roommates. “I knew they would soon start asking questions about my on and off sickness. I just had to tell them, although my mother did not want me to do so. My father, on the other hand, encouraged me to.”

Fortunately, the girls were sympathetic. They accepted her and helped her when she fell sick.

Her face brightens up as she says: “It was the first boarding school where I felt comfortable. I had fun and started swimming again. The administration knew about my condition and was caring.”

Towards her O’level exams, the migraines struck again. “I spent the night awake, saying to myself there was no way I was going to repeat another year. The administration was concerned. My father took me away for treatment and fortunately I was able to return in time.”

She managed to complete her exams without any other incidents. “The administration of the school was so happy for me and promised to enroll me for A’level.” However, the school’s policy on corporal punishment for wrong doers made her opt for another school, so she enrolled at a different school.

At the new school, the director of studies and school matron made her prefect because then she would be exempted from housework and punishments.

“The school was different from all the others I had been to. It was an interesting life, from letting us grow hair, to attending dances and allowing a cool dress code” Sengendo remembers. She opened up to three of her friends about her condition. They became close friends and none of them ever breathed a word of it to anyone. Sadly, Shortly afterwards, her mother passed way.

Five weeks to the A’level exams, Sengendo was seated close to a group of angry girls, who had earlier been told by the director of studies to leave their dormitories. They were not happy.

Being in a group, they hurled insults at the director, knowing she would not be able to tell who exactly had done so.
“The school matron heard and walked in the direction. Unfortunately, I was seated near to these girls. When the matron reported the matter to the director of studies, it is only me who was singled out. I was summoned to her office.

She did not wait for me to get in. She met me at the verandah and started hurling insults at me, even when I tried to defend myself.”

The office was in a quadrangle, so when the other students heard, they gathered on the other verandahs to watch.
“The other girls tried to tell her that I was innocent, but she would not listen. She slapped me hard and continued yelling. The ringing in my ears was so loud, I could not hear what she was saying,” Sengendo narrates.

Sengendo was handed an expulsion letter. She called her father.
“I had never seen him so angry. We went back the following day and the teacher told her side of the story, insisting I was guilty. She said all she would allow me do was return for exams.”

She says the five weeks she spent at home were hell. The anger in her would not let her concentrate on her studies. To make matters worse, her father blamed her.

“There was no one at home I could confide in. The only person who encouraged me was my counsellor at the hospital from where I got my ARVs.”

By the time she returned to sit her exams, the whole school knew she was HIV-positive. “I felt like I was suffocating in the school. Thankfully, my friends who had always known my status did not change their attitude towards me,” Sengendo says.
To add insult to injury, both the matron and director of studies were in charge of checking the girls for any cheating material before they got into the exam room.

“Each time I saw them, a flash of the incident would go through my mind and I would get so angry that I did not care what I wrote.”

When the results were released, she had scored only two points. She blames the school’s director of studies and the matron for her failure.

She says the top administration in different schools should take note of and punish those guilty of stigmatising HIV-positive students.

“This should be taken seriously because the way you treat students affects them negatively. I am not the first and will not be the last to face stigma unless there is change.”

She believes that schools should leave it to the student to decide whether or not to disclose to their status.

Five weeks to the A’level exams, Sengendo was seated close to a group of angry girls, who had earlier been told by the director of studies to leave their dormitories. They were not happy.

Being in a group, they hurled insults at the director, knowing she would not be able to tell who exactly had done so.
“The school matron heard and walked in the direction. Unfortunately, I was seated near to these girls. When the matron reported the matter to the director of studies, it is only me who was singled out.

I was summoned to her office. She did not wait for me to get in. She met me at the verandah and started hurling insults at me, even when I tried to defend myself.”

The office was in a quadrangle, so when the other students heard, they gathered on the other verandahs to watch.
“The other girls tried to tell her that I was innocent, but she would not listen. She slapped me hard and continued yelling. The ringing in my ears was so loud, I could not hear what she was saying,” Sengendo narrates.

Sengendo was handed an expulsion letter. She called her father.
“I had never seen him so angry. We went back the following day and the teacher told her side of the story, insisting I was guilty. She said all she would allow me do was return for exams.”

She says the five weeks she spent at home were hell. The anger in her would not let her concentrate on her studies. To make matters worse, her father blamed her.

“There was no one at home I could confide in. The only person who encouraged me was my counsellor at the hospital from where I got my ARVs.”

By the time she returned to sit her exams, the whole school knew she was HIV-positive. “I felt like I was suffocating in the school. Thankfully, my friends who had always known my status did not change their attitude towards me,” Sengendo says.
To add insult to injury, both the matron and director of studies were in charge of checking the girls for any cheating material before they got into the exam room.

“Each time I saw them, a flash of the incident would go through my mind and I would get so angry that I did not care what I wrote.”

When the results were released, she had scored only two points. She blames the school’s director of studies and the matron for her failure.

She says the top administration in different schools should take note of and punish those guilty of stigmatising HIV-positive students.

“This should be taken seriously because the way you treat students affects them negatively. I am not the first and will not be the last to face stigma unless there is change.”

She believes that schools should leave it to the student to decide whether or not to disclose to their status.

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The national HIV prevalence stands at 7.3%

By Watuwa Timbiti

Until recently, Uganda had earned herself a celebratory status in the fight against HIV/AIDS. The national HIV/AIDS prevalence rate has shot from 6.3% to the current 7.3%, translating into 130,000 infections and 50,000 deaths annually.

Uganda now has the highest prevalence rate compared to Kenya, which has about 6.3% and Tanzania which has between 5.3 and 5.7%.

Of the 18% men involved in concurrent or multiple partnerships, only 13% are reported to be using condoms. This was revealed during a recent public debate by Makerere University and the US Centres for Disease Control and Prevention.

Where is the problem?
Dr. Alex Coutinho, the executive director of the Infectious Diseases Institute observed that of the estimated 100,000 HIV-positive pregnant women, only 25% access prevention of mother-to-child transmission (PMTCT) services, adding that commercial sex is equally central with 10% infections annually.

Notably, Coutinho cited leadership challenges, arguing that leadership at all levels is invisible in the fight against HIV.
“Most of our leaders do not lead by example. How many religious, cultural and political leaders have, as an example, done public voluntary counselling and testing or circumcision?” Coutinho asks.

Despite all the achievments so far, there is a missing link. According to a 2011 report, HIV prevalance among poor women is 6.8% and 9.9% among rich women.

Additionally, Coutinho said although circumcision is said to reduce chances of infection by 66%, the prevalance rate among communities which traditionally practice circumcision is 4.5%.

“At the time we had low infection rates, we did not have national strategies. We only had good leadership with the abstinence, behavioural change and condom use (ABC) song,” Coutinho says.

Speaking at the same debate, Milly Katana, an HIV-positive activist, observed that most of the policies are not focused on the drivers of high prevalance such as gender-based violence, poverty, among others, yet these are problems affect a larger population.

Prof. Vinand Nantulya , the Uganda AIDS Commission chairperson, said all went bad with the shift from the integrative and collective enforcement of the ABC approach. “What used to work as ABC has been segmented. Programmes that address the A have been neglected. The B has also been forgotten and most HIV strategies are, unfortunately, emphasising the C,” he observed.

way foward
Makerere University Chancellor Prof Mondo Kagonyera observed that the prevalence rate went down in the early years because HIV-related deaths were visible, so there was fear.

“To have a successful AIDS control programme, it should be instilled through fear so that they have it in mind that there is a danger and guard against it,” Kagonyera observed.

Nantulya added that abstinence should be taken seriously. To parents, he says: “You have the power to protect yourself, spouse, children. To have a child is a choice and so is bringing up an HIV-negative child.”

School administrators
Different schools have different ways of handling HIV-positive students. Solomon Mirimu, the public relations officer of St. Lawrence Citizens’ schools and colleges, says to fight stigma, students are encouraged to disclose their status to only the school nurse.

“We also caution the nurse that no word about those students’ status should get out. Guiding and counselling HIV sessions in the school are mandatory for each student,” he says.
Seraphine Amulen, the head teacher of St Mary’s college Namagunga, says students and staff are often sensitised about HIV.

“We often have a peer counselling sessions during assemblies. We encourage disclosure to the administration for easy monitoring,” she says.

Born with HIV
Dr Philipa Musoke, a senior paediatrician with Makerere University Johns Hopkins University Research Collaboration, says currently Uganda has approximately 150,000 children living with HIV/AIDS. Ninety percent of these children got HIV through mother-to-child-transmission, the rest, through sexual abuse and playing with sharp instruments. Approximately 50% of these children are in school.

She acknowledges that stigma is a problem in schools. “Students see rashes on their counterparts and thus start the rumour mill. For adolescents, it is worse because they are at that age where they want to be just like their peers, taking medicine reminds them that they are different.

Ministry of education
Dr. Y. K. Nsubuga, the director of basic and secondary education, says HIV-positive students are protected under the HIV workplace policy.

“Although it is for workers, even students are included. No child should be excluded from school because of their sero status,” he says.

Nsubuga continues that head teachers have power to initiate punitive measures for teachers who stigmatise students.
He further notes that students are free to report these cases and when ignored, they can go to higher authorities, such as the district education officer or the chief administrative officer. “The teachers, are given counselling skills. Even with classwork, should make time to counsel these students,” he says.

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School authorities are most at fault

By Vision Reporter

Adeline Twimukye, a senior counsellor in the specialised clinic of the 16 to 24-year age group, at Infectious Diseases Institute (IDI), Mulago Hospital, says she has counselled a number of young people who are stigmatised in school.

“On a weekly basis, six out of 10 clients are students. If stigma is not addressed, their school performance is highly affected. Even worse, they may consider spreading the virus as well as harbour suicide tendencies,” she warns.
Twimukye notes that for most of them, awkwardly, the school staff are to blame.

She explains that usually, such students need to undergo regular check-up as well as have drug refills, hence their often absence from school.

“The stigma may come from the person in charge of documentation that permits them to leave school, complaining that they are going out of school too often. Or it may come from the gatemen or a teacher who talks to them in a cruel manner because they missed classes or tests,” Twimukye says.

Hence, she encourages the students to disclose their sero status to the administration, so as to easily get permission to leave the school, and so that they can get help in case of emergencies.

She however says, because not all the administration staff may know this information, where it has been availed, the child is stigmatised by those unaware of their condition. Sometimes even by those in the know.

Twimukye adds that sometimes, stigma is gender based, with the girls suffering more than the boys. She says some girls have confided in her that teachers keep asking them whether they are pregnant, since they keep going to the nurse or away from school for a refill of their drugs.

“The accusations of pregnancy even get worse when the student suffers side effects such as nausea and headache from the drugs.”

Julian Nkurayija, the project coordinator of the young adult’s clinic at IDI warns that stigma often affects their adherence to medication. They do not want to be seen taking drugs because perhaps they have been teased about it before.

“This is dangerous because it means poor health, falling sick often and missing school. What’s more, because a number of these children are in first class schools, they are expected to excel and when they don’t, they become frustrated with life,” Nkurayija explains. She adds that a number of these youngsters are forced to be subtle with the way they pack their drugs, that many put their ARVs in bottles labelled ‘vitamins,’ or ‘brain boosters.

Twimukye adds that besides non-adherence to treatment, stigma creates bitterness and a child may decide to spread it around just to revenge.

Twimukye advises that schools fight stigma by educating staff and students alike about HIV.
“Teachers need to be educated on how to handle HIV-positive students and explain to them that the disease comes with low immunity, which explains regular check-ups and falling ill often.

The students need to know that like them, their HIV-positive colleagues have dreams and should be treated with love and respect,” Twimukye recommends.

She notes that as much as teachers undergo counselling lessons during their studies, they are overwhelmed with academic issues in the school and may not have the time to counsel these students and give them a listening ear.

“Schools should recruit specialised counsellors for such students. Especially the adolescents, go through a lot. They need someone in the administration to earn their trust so that they can open up about their problems — someone who can be their friend, and assure them of confidentiality and trust.” Twimukye says.

She explains that most young people who are HIV-positive got infected through mother-to-child transmission, that some of them may have no parents to share their concerns with. She says this is why a specialised counselor is crucial.
However, Twimukye blames the bitter consequences of stigma on poor parenting.

“When these children are not comfortable opening up to their parents, they will not know how to handle stigma. Open communication should be encouraged by the parent as early as possible, ideally before they reach adolescence age,” she says.

She advises that children who are HIV-positive be enrolled in peer support groups. This empowers them as they get to meet people who go through the same challenges as they do,” she says.

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trueMothers share their woes

Jessica Nakalema, 37, is a proud mother of three HIV-positive children aged 18, 15 and 12. They are all on ARVs.
“They are healthy, beautiful and brilliant in school. I know they will make it in life one day and will give me grandchildren.”
But she has a bone to pick with inconsiderate school authorities who cause stigma by spreading rumours.

“Recently, my eldest daughter came back home crying and vowed not to return to school. One of the teachers had told her off and added: “After all you are sick; you will make us all sick!” I was shocked because I had only confided in the bursar and now a teacher knew?”

Her son faced a similar situation when she asked the headmaster to allow him to join the boarding section because TV was a big distraction to his revision schedule at home and she feared for his grades.

“The headmaster boldly said he could not admit a child with HIV, saying they are usually falling sick.”

Nnalongo’s children are HIV-positive

Similarly, Irene Nnalongo, a mother of eight who works at Nalufenya Children’s Hospital in Jinja, discovered that her children were being stigmatised at school.

Unlike Nakalema’s children who were being stigmatised by teachers, Nnalongo’s children were stigmatised by fellow students.

Two of her children are HIV-positive and in primary school. They are on ARVs. However, at the beginning of this year, one of them lost interest in going to school.

“The eight-year-old was taunted by one of his classmates, a stubborn boy, who even coined a song about HIV and my son. I spoke to the headmaster and the boy was punished. My son now loves school,” says Nnalongo.